To think I am a carer even if dh doesn't think so?

[Stressedgiraffe]

Just had a visit from a carers nurse after a Dr referral for stress and help
Dh is recently disabled and has just been awarded esa and has applied for pip. Should be according to the nurse entitled to enhanced pip.

He has daily seizures and is often incontinent.i have to remind him to take medication, support him after seizures, clean up after him.

The nurse suggested joining the local carer's support network. Seeing if there is respite care available if needed and getting him a blue badge.

Dh has hit the roof stating I'm not caring for him. I do nothing to help him etc

I work ft. Do all the housework, cooking,cleaning laundry etc. I sort out all appointments for dcs. I'm financially responsible for everything.

So who's right dh or the nurse?
Yabu- dh - I'm not a carer
Yanbu- nurse- you are a carer

it essentially signals the end of the marriage as you know it.

your role changes from partner to carer, and in the person with the disability’s case, the role changes from partner to dependent

That is in no way necessarily the case.

Yes the relationship might be different in some ways, but show me a decades long relationship that hasn’t changed over time?

My marriage is very much a partnership of two equals who love each other and both contribute to the relationship and family.

We still go out, talk, laugh, argue, have sex, watch tv, shlep round ikea, parent etc like anyone else.

That’s a really good description, thank you for the reference.

we need language that we agree on to be able to debate the issues that carers face, that others without those responsibilities do not.

This is a very important point- without language for, a definition of and group understanding of what being a ‘carer’ is, there is no chance of protecting or bettering carers rights.

If ‘caring’ just means what you do in a marriage then why would carers allowance be paid? All spouses care for each other, like all parents care for their kids so no one needs extra money for it. The same would go for support groups and respite care- if you aren’t ‘a carer’ you don’t require a break from caring do you? People don’t just take breaks from being a wife.

Unpaid familial carers need legal and moral recognition or there really won’t be any support left.

My daughter has disability. I’m her carer. My responsibility and what I do for her far beyond what normal mother does for her child, it’s completely different life. It’s extra job full time. You won’t understand if you haven’t got this experience. It brings very different challenges and for this I need specific support.
And don’t even tell me that it’s a part of life when you have a child. At 16 I was looking after my mother if she needed when she was unwell and visited my medical appointments on my own. Yes, my mum could go with me if she wanted but my daughter can’t go anywhere without me, that’s the difference.
Family members get support to help them manage this tricky situation of caring for a relative exactly for this reason but they are carers and it should be recognised.

@pizzaHeart stormingnorman is in your terminology a carer. You are missing what she is saying.

And what exactly I’m missing? Genuine question.

No one is denying the work. My DH is disabled as well. And everyone thinks benefits, respite, etc should be available.
The issue is framing that as a carer role instead of wife, husband, parent. It changes your identity and by default the relationship.

The thing is that I do 2 roles: a parent AND a carer.
I’m not a carer instead - I do it alongside. it’s bloody hard. And I don’t want anyone to think that it’s somehow comparable with usual parenting responsibilities.

You can fuck right off if you think you can tell me what I can and can’t comment on.

I'm my mum's carer but she isn't keen on the term, I think it makes her think about her illness which she's 99% of the time unaware of.

You sound like you've got a difficult load to carry. If it iss possible would he maybe accept someone who actually was a carer?

It adds to the role of husband or wife and adds ‘carer’ to your identity, but that doesn’t have to diminish your identity or your relationship.

I haven’t in any way minimised the experience of people who care for loved ones. I literally said people in these positions need more recognition.

What I don’t like is letting the term define a relationship. It should not be more important than the primary relationship which brought carer and cared for together.

She didnt tell you what you are allowed to comment on, merely suggested that you shouldnt state what you think are facts when you dont actually have an understanding of the reality of the situation that many many people live every single day.

I was my sons mother, I was also his carer because until he was a lot older, he needed extra care. I could, if I had the money, have outsourced this job to someone else and it would have been classed as a full time job. As it was, I couldnt afford that so had to be a mother to my other children, work AND be a carer, all as a single parent because my first husband buggered off and didnt see the kids again. Said it was "too much work" for him to share with me, so he left it all in my hands.

There is a massive difference between being a parent and being a parent carer.

Or put simply, if you stop telling parent carers what you think that they are, you wont look so silly.

You are a carer and deserve all the help and support you can get. I wouldn't have admitted it back then but in my early twenties my mum was a carer for me. I was also having seizures and she would get up at the crack of dawn to drive me to work and pick me up. She'd drive me to all appointments, advocate for me and take me to meet my friends or my son to parties etc. She would also care for me after a seizure, always on alert for a bang in the night or the morning just incase. Even now they are controlled of I don't respond to a message or a call for a day she will be round the house.

I feel guilty now I never realised this and she didn't get more support. My mum would also sleep in the same room as the baby 2/3 nights a week so I could catch up on sleep. She's an angel and a blessing and i wouldn't be alive without her.

I think a big problem is that a lot of people DONT think benefits and respite etc should be available.

Services are being cut and cut. More and more is being expected of familial carers while they are characterised as free loading opportunists and disabled people are demonised as lazy.

Loosing what little support is available is a genuine risk, and it’s much easier to fight if there is a consensus on who and what a carer is.

I don’t think it’s comparable to normal parenting. You missed the bit where I said it needs more recognition. I’m talking about terminology and identity.

When I go to the hospital with my mum they ask what our relationship is and also if I'm her carer. I am registered with my GP as her carer. It is a recognised role for assisting someone living with disability or illness whether family or not.

Another thing to add to you being a carer, you can claim discount on your water rates as you have to deal with your husband's continence needs after a seizure & if you have a spare bedroom you can claim 25% discount on your council tax. There is a card you can get that means you get in free at the cinema if you go with him, if you accompany him on public transport & he has a disabled person's travel pass, you travel for free. If you get UC, you can get a carer's premium, you can get it backdated to the date he got awarded PIP.

She really did tell me I shouldn’t comment. Those were the actual words.

And I didn’t tell parent carers what I think they are. I said I didn’t like a word.

I also didn’t say that the additional caring role wasn’t tough or should go unrecognised.

This is a forum. It’s a place where people give opinions. If you are this easily triggered you should probably take a break.

I went from being a wife to being a carer overnight, my then husband went blind driving to work & within a month was diagnosed with MS & never worked again. It was a massive change as I was 7 months pregnant with ds. He hated the fact I was considered his carer, even though like you I was dealing with medication, continence, washing & dressing. Would it help if a medical professional was to discuss this with him, maybe some talking therapy would help.

I couldnt agree more.

If you are disabled you are lazy and if you are a carer then you are enabling the laziness AND are lazy yourself.

Rishi would cheerfully see us all back in the days when anyone who wasnt fit and well and working was shipped off to some institution or other. I wonder how long it will take before being shipped to Rwanda will be yet another benefits sanction and it is renamed "The Sunak Workhouse"

I get carers allowance for what I do for my parents. To get that I have to care for them at least 35 hours a week (those were the days!), it works out at 2.30 ish an hour if a carer only works those minimum hours and most work VASTLY more. If I left my parents to the state their carers would be on atleast NMW which is almost 5 times as much. Familial carers save the state tens of millions, if not more, a year.

Tell me that that is fair.

Please dont attempt to patronise me, you are not clever enough.

Also, what she said was "Probably best not to comment when you don't know what you're talking about." which is advice, not an order. Comprehension a bit of a problem for you?

What I don’t like is letting the term define a relationship. It should not be more important than the primary relationship which brought carer and cared for together.

If being a carer (or a dependent) eclipses the primary relationship then it probably means that something else has gone wrong in the relationship, or that the disability is so severe that there isn’t a spousal relationship left in any meaningful way.

I’ve never known a parent carer to not consider themselves a parent who is also a carer- one never stops being a parent however old or ill a child gets.

Sometimes with a spouse carer if someone is catatonic/has totally forgotten them or something then the spouse IS for all intents and purposes only a carer because the opportunity for a personal relationship has been removed.

However I think if someone feels like they are just a carer, or just a dependent even though the opportunity for communication and relationship remains then it isn’t because they accepted carer as their identity, it’s because there was something not right in the relationship to begin with.

Like when women say ‘I’m treated like the maid, I feel like just the cleaner’- they haven’t brought that on by identifying themselves with that role- they have bad relationships with thoughtless people!

I made a nuanced comment about terminology and allowed you to drag me down to your triggered defensive state. I’m not going to carry on like a pair of monkeys flinging shit at each other.

What would help massively in every one of these situations would be if disabled people weren’t talked of, thought of and treated like they are lesser.

Why do people struggle to accept and admit they need carers? An enormous part of it is that it’s made to feel shameful- you are a burden, holding able bodied people back, costing your family and the state money while not contributing anything.

Of course people rail against becoming one of ‘those’ people- the people who are lazy, get benefits, trick blue badges out of the council, block hospital beds, hold people up by being too slow on the pavement and worse than that are just a bit gross… expecting other people to feed them while they drool, or make a show of themselves by walking funny or making odd movements.

Im ranting now- it’s just so much bullshit all round and EVERYONE affected, carers and disabled people alike suffer more than is necessary.